Chronicles of PD Fighter

Saturday, May 31, 2008

Speech and Swallowing Problems in PD

Speech and Swallowing Problems in People with Parkinson DiseaseBackgroundMost people know about the common symptoms of Parkinson disease (PD), which include tremor, slowness of movement, and stiffness. As we've talked about in previous issues of WE MOVE News, people with PD also develop nonmotor symptoms. These symptoms usually have nothing to do with movement. One of the nonmotor symptoms that may occur impair a person's ability to speak and swallow. Up to 90% of people with PD have problems with swallowing and speech at some time during their illness. These problems affect their health, ability to communicate, psychological well-being, and quality of life. Voice difficulties include lack of volume and pitch, poor vocal quality, rushed speech, and difficulty enunciating or "saying" words. Problems with swallowing may cause difficulty in getting enough to eat, resulting in poor nutrition. Swallowing problems may also lead to serious illnesses like pneumonia.Who were the researchers and what did they do?Drs. Sapir, Raming, and Fox reviewed all published studies on the treatment of speech and swallowing problems in PD. Some studies showed an improvement in speech and swallowing when patients were treated surgically with deep brain stimulation (DBS) or with drugs typically used to treat PD. Other studies showed the opposite effect, with the speech and swallowing problems actually becoming worse with these treatments. Dr. Sapir and his coworkers also identified two other techniques, transcranial magnetic stimulation and injections of collagen into the vocal cords, that may be helpful in improving speech, but these treatments need to be studied in more patients before they can be recommended. The researchers did identify one treatment, called LSVT-LOUD (which stands for Lee Silverman Voice Treatment method), that helps most people with PD. This intensive speech therapy focuses on increasing loudness of speech and then teaching the patient, through behavior therapy, how to use the new skills in everyday life. Further research is needed to study the effects of therapy on swallowing difficulties in patients with PD.Sapir S, L Ramig, Fox C. Speech and swallowing disorders in Parkinson disease. Curr Opin Otolaryngol Head Neck Surg 2008;16:205-210.For more information on speech and on swallowing problems, please visit http://go.reachmail.net/go.asp?tid=152608&eid=7827&sb_id=245200,245200 and http://go.reachmail.net/go.asp?tid=152609&eid=7827&sb_id=245200,245200GlossaryNonmotor signs and symptoms of Parkinson disease include apathy, anxiety, bladder problems, constipation, dementia, depression, fatigue, hyperhidrosis (excessive sweating), numbness, pain, psychosis, sexual dysfunction, sialorrhea (excessive drooling), sleep disorders, and speech and swallowing problems.

Tuesday, May 27, 2008

Can Pilates help Parkinson's?

http://forum.parkinson.org/forum/viewtopic.php?t=4712

Sunday, May 25, 2008

Parkinson's Day get -together

Friday May 9, 2008
Parkinson’s Day get-together in PJ
IN A tribute to the late Lloyd Tan Pao Chan, founder and former life president of the Malaysian Parkinson's Disease Association (MPDA), the local Parkinson’s community will commemorate his birthday by celebrating Malaysian Parkinson’s Day tomorrow.
Tan, who was stricken with Parkinson's plus syndrome, decided to change the life of the Parkinson’s community in Malaysia by starting the MPDA in 1994.
It was the first society of its kind in Malaysia, at a time when PD was hardly heard of in this country.
Heroes: The late Tan with his wife Yap Yun Kin.
His efforts have made a huge difference to many PD patients and their families, who now have a place to belong to, get support, as well as learn how to cope with the disease.
Today, 18 years later, many Malaysians remain ignorant of the debilitating disease.
The cardinal symptoms of PD such as slowness of movement and trembling of hands are commonly misunderstood as “natural ageing process”.
As such, among the estimated 15,000 Parkinson’s patients in Malaysia, only two-thirds of them are diagnosed and treated.
The remaining 5,000 Parkinson’s patients are left on their own, suffering from the “natural ageing process”. And although there have been rapid advances in the treatment of PD (new medications and brain surgery) overseas, treatment in Malaysia remains pessimistic.
Many Malaysian PD patients are confined to their homes. They cannot work, drive and go overseas for holidays because of under-medication. Because of high costs, brain surgery is also not a viable alternative for these sufferers.
In an effort to increase awareness about PD, as well as to honour the life work of Tan, all Parkinson's patients and their caregivers are invited to attend Malaysian Parkinson’s Day tomorrow at the Crystal Crown Hotel in Petaling Jaya, from 12.30pm to 3pm.
The Selfless Warrior, a book about Tan, his battle with Parkinson's as well as his achievements will be launched at the event. It is written by neurologist Dr Chew Nee Kong.
At the event, funds will also be raised for the Lloyd Tan Trust Fund to provide financial assistance for those who require brain surgery.
Proceeds fro0m the sales of this book will also go to the trust fund.
For details about the event, call Patricia Ho at 03-40240060 or 012-2137245.

Trust fund set up for PD patients

Parkinson’s patients
By CHOONG MEK ZHIN
PATIENTS suffering from advanced stages of Parkin-son’s disease (PD) can now look forward to financial aid for brain surgery from the recently launched Lloyd Tan Trust Fund.
“Only 25 Malaysians have undergone the surgery locally over the past five years. Most are unable to because of the high cost and there was little or no aid given to PD patients,” Pantai Cheras Medical Centre consultant neurologist Dr Chew Nee Kong said.
Dr Chew said that the first surgery cost RM80,000 and an additional RM60,000 every three to five years for the device's battery replacement.
PD is a progressive nervous disorder that causes tremors of the hands as well as the general slowness of body movement and stiffness.
United: The late Tan’s wife Yap Yun Kin (centre with spectacles) surrounded by PD patients and Negri Sembilan Parkinson’s Society president Gharizah Hashim (yellow baju kurung) cutting a cake commemorating the first ever Malaysia Parkinson’s Day that falls on May 8.
It can affect people of all ages from as early as 30s though it is generally an illness of the elderly.
An event commemorating the late Tan who passed away in March last year was organised by Pantai Cheras Medical Centre in collaboration with GlaxoSmithKline.
The event also saw the launch of the trust fund’s website and the book Selfless Warrior.
“The book was written as a tribute to Tan's life. He was a man who had suffered not from PD but Parkin-sonism Plus Syndrome that is exactly like PD except that it is 10 times worse. He is an inspiration and icon of perseverance to others,” Dr Chew said, adding that the proceeds from the book sales will go to the trust fund.
He added that the book also had information about PD and gives readers insight into the neglected plight of Parkinson’s patients in the country.
Dr Chew believes that PD patients should not give up on life, as most of them are still able to lead a relatively normal life despite the illness as what Tan, the founder and first president of Malaysian Parkinson’s Disease Association (MPDA), had done.
“Patients are still able to do a lot of normal things like travelling, driving, working and such with the help of medication and of course, Deep Brain Stimulation surgery,” Dr Chew said.
He added that PD patients found this difficult because they had developed a social stigma and fear of others staring at them. “Tan is our icon because he had not been afraid to show himself to the world,” he said.
For more information on the trust fund, visit the website at www.lloydtan-trust.com

Lloyd Tan - The Selfless Warrior

Spotlight: Lloyd Tan takes stigma out of Parkinson'sMost Parkinson's patients tend to shy away from the public due to their illness.Heidi FooNSTOnlind - But Lloyd Tan Pao Chan went against the grain, doing things most PD patients would never dream of.After being diagnosed at 55, he did not give in to his fears or sense of despair.Rather, he founded the Malaysian Parkinson's Disease Association (MPDA) in 1994, becoming its life president.Eleven years later and permanently in a wheelchair, he again did the unthinkable.He travelled to Hong Kong to represent the country in the Asian and Pacific Parkinson's Association (APPA) conference.This was also where Pantai Cheras Medical Centre neurologist, Dr Chew Nee Kong, saw the beginnings of a book on Tan which he later published as the Selfless Warrior.Their relationship had begun as doctor and patient but ended up as friends.Dr Chew said what had struck him first about Tan was his resilience in the face of the disease."For a PD patient to leave the house is a great obstacle. And for a Parkinson's patient to leave the house, and declare to the whole country that you have PD is at least 10 times more challenging because of the social stigma."In my experience, at least seven out of 10 PD patients shy away from society. They prefer to stay indoors because the illness causes uncontrollable trembling of the hands."But Tan took it all in his stride, according to Dr Chew's book.The second last chapter entitled "Mr Lloyd did not have PD" is about how Tan first showed symptoms of PD at 53 years and was diagnosed in a local hospital two years later."After treating him for a few years, I discovered that what he had was not PD. What he had was actually Parkinsonism-Plus Syndrome (PPS). "It came as a real shock. That was in 2004, when I revised his diagnosis, it was exactly 16 years after his illness started."Dr Chew said it was not unusual to revise a PD patient's diagnosis after eight or 10 years as wrong diagnosis could occur."PPS is actually 10 times worse than PD. In the sense that they are 10 times slower, their legs feel much more heavier and the suffering is much more severe.""Yet, he did so many things for the Parkinson's community. As a patient alone he actually outclassed other Parkinson's patients."He said there were about 15,000 PD and PPS patients in the country.In April last year, a month after Tan died, Dr Chew was inspired by Tan's fighting spirit to write the book.